Wellness speaker talks of cancer diagnosis in her 20s

WOOSTER -- Heidi Schultz Adams, a young-adult cancer survivor, wrapped up the 2010 Wellness Series on Wednesday, demonstrating she is both speaker and advocate.

Maybe it was the snow. Maybe it was Ash Wednesday. Maybe it was a series of other events over the past month. Whatever the reason, there were only around 20 people who braved the cold to hear about how young adults have historically fallen through the cracks when it comes to cancer diagnosis, treatment and research.

While there normally are hundreds of people attending a wellness presentation, it might have been to the advantage of the group others did not show. Adams, founder of Planet Cancer, an online community for young adult cancer survivors, abandoned her PowerPoint presentation, stepped down from the stage and engaged the audience in a conversation about her passion, encouraging anyone with a question to ask it.

As a 26-year-old, Adams said she began to develop a terrible pain in her ankles. Because of playing soccer and running, she and her physician believed it might be related to her physical activity. Eight months and four doctors later, she discovered she had Ewing's sarcoma, a primary bone cancer generally seen in children and young adults.

After the diagnosis in 1993, she came to realize the gap and void in services and support to cancer patients in her age group. She thought she was the only one her age with cancer because she was always surrounded by people her "grandparents' age."

While the people were nice, Adams said she had no one who could understand the issues she was battling: Would she ever marry? Would she have a family? She was going bald and her boyfriend left her.

"Cancer throws this great wrench in the works, and everything comes to a standstill," she said. "Your world turns upside-down. It was like being a 70-year-old in a 24-year-old body."

Adams said having cancer forced her to deal with things much earlier, like understanding insurance coverages, disclosures when applying for a job and other things that were "just not normal."

Another thought occupying her mind was "to think about the fact you might die, whether you might have a family," Adams said.

During her 14 months of chemotherapy and radiation treatments, she only met four others in her age group who were suffering from cancer. She recalled the first time. She was receiving chemotherapy, and as she lay in the bed she heard a song playing from U2's "Joshua Tree" album.

"I said, 'That person is under 40, and I am going to find him,'" she told the group. When she located the source of the music, she met a 20-year-old man.

"You bond," Adams said.

The worst part was not meeting only four others her age, it was three of them eventually died.

"If you think this is lonely beforehand, ..." she said, it is even more so afterward.

Adams was diagnosed when the Internet, as it functions today, was in its infancy. So, she could not seek out others like her online. This yearning to find others facing similar challenges ultimately led to her founding Planet Cancer (www.planetcancer.org).

She warned the audience the site was designed for young adults, who do not approach the disease as older adults do. Sometimes they can be irreverent, and the humor can be bizarre. She described the attitude displayed on the site as "in your face." A coffee mug one member was selling had the message "F_ck Cancer" emblazoned upon it, which can be offensive to some.

The relationship formed online via Planet Cancer led to weekend retreats. This was where Dan Dean, substance abuse coordinator for the Longbrake Wellness Center on the campus of The College of Wooster, met Adams. He, too, is a young-adult cancer survivor. He was diagnosed at age 23.

"It was refreshing to meet others," Dean said.

Erwin Reidner asked Adams if she had doubted her diagnosis, given the fact that young adults tend to be healthy.

Her overriding feeling was one of relief, she said. For months she could not do anything about the pain in her ankles, which caused her to sleep poorly for months. Finally, she would be able to do something.

Adams said Dr. Archie Bleyer helped draw attention to the gap in diagnosis, treatment and research for young adults. Studies showed pediatric cancer patients and those around 40 and older saw improvements in treatments and survival rates. This was not the case for those in the 15 to 39 years old range.

Dave Cannon, manager of rehabilitation services for Cleveland Clinic Wooster, said cancer is one of those things people don't like to talk about, and the young adult segment of the population seems to be at a loss about what to do. He said Adams touched upon some important issues for that group.

Adams, who spends her time serving as director of grass roots engagement for the Lance Armstrong Foundation's LIVESTRONG initiative, showed how important this issue is to her following her presentation.

Reporter Bobby Warren can be reached at 330-287-1639 or bwarren@the-daily-record.com. He is robwar0100 on Twitter.

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